The PACE data have been released (9 Sept 2016)

[Snowdrop]

And @alex3619 has now mentioned two possible actions: documenting and verifying stories of harm from GET
and getting a Royal commission underway (admittedly no small task)
Certainly many of us are too sick to do much of anything beyond sign petitions and bang on the keyboard. Perhaps a job for ME advocacy groups. I nominate Sonya Chowdhury.

 

[adreno]

Has anyone in the mainstream media cared enough about the PACE data release and reanalysis to even mention it?

 

[Yogi]

And @alex3619 has now mentioned two possible actions: documenting and verifying stories of harm from GET
and getting a Royal commission underway (admittedly no small task)
Certainly many of us are too sick to do much of anything beyond sign petitions and bang on the keyboard. Perhaps a job for ME advocacy groups. I nominate Sonya Chowdhury.

A project has been set up for GET harm stories

http://stories.meaction.net/

I assume that you are joking about SC?

 

[anciendaze]

Not sure if this has been posted elsewhere, but as I was drinking my morning coffee just now a little bird told me that a (reliable) little bird told them that Prof Peter White retired from his clinical practice the day before the data was released.

I guess that he is now concentrating entirely on his 'research' and the defence of PACE.

Should your (reliable) little bird be correct, I suspect the motivation came from recognition that malpractice insurance costs could be quite substantial. QMUL can't be enthusiastic about mounting ineffective legal actions for such questionable practices.

 

[Snowdrop]

@Yogi

If you mean the Royal Commission then no. Or something similar. Here I confess I have little knowledge of how these things work and what is required.

I'm not batting well today. You meant SC as in Sonya Chowdhury duh.

Yes, a wee joke (sort of) I would like to see her get off the fence and make clear unambiguous statements not in support of PACE. I think this is only fair play since she is CEO of a ME advocacy org. I may be putting my foot farther in my mouth if it turns out she has done this--hard to keep up with everything--or remember when I have.

 

[Snowdrop]

@adreno

CTV news is watched here across country.

https://twitter.com/i/web/status/775727445278425088

Edit: It's mentions PACE IIRC but not the reanalysis which I now note was your Q
My bad.

 

[jimells]

The system only acts when people push it from the outside. No one is going to do it for us is the harsh truth. There has to be an active group willing to keep pushing.

Direct Action Gets the Goods

That means we have to do this ourselves. I will do anything short of mortgaging my home to see these people held to account in a court of law - civil or criminal makes no difference to me. I live for the day I can watch Sir Simon, Peter White, and pals squirm under vigorous cross examination.

In fact, I will put up one month's income to start a legal action - that's $1000. But I don't have the strength to do this myself, as much as I would like to.

(I guess I will have to go back to logging in to PR to check my private message inbox - but I can't deal with the "Alerts" anymore)

 

[worldbackwards]

That means we have to do this ourselves. I will do anything short of mortgaging my home to see these people held to account in a court of law - civil or criminal makes no difference to me. I live for the day I can watch Sir Simon, Peter White, and pals squirm under vigorous cross examination.

In fact, I will put up one month's income to start a legal action - that's $1000. But I don't have the strength to do this myself, as much as I would like to.

(I guess I will have to go back to logging in to PR to check my private message inbox - but I can't deal with the "Alerts" anymore)

Welcome back Jim!

 

[alex3619]

I think that PACE could be attractive as the trial that is held up as an example of the need for change. This takes it beyond a legal issue where it may be more safe from harm and into the realm of public opinion. Being damned by public opinion would be no small thing.

Yes, there is a move toward a change in what is acceptable scientific culture. Its slow, but its growing. I have called the PACE trial a Rosetta Stone, its a glimpse into much of what is wrong.

Cort Johnson just wrote a piece on what all this might mean to the Lancet: http://www.healthrising.org/blog/2016/09/14/lancet-pace-chronic-fatigue-syndrome-ridicule/

The system only acts when people push it from the outside. No one is going to do it for us is the harsh truth. There has to be an active group willing to keep pushing.

Things happen when people make them happen. If we do nothing, and nobody else does anything, then nothing changes.

 

[BruceInOz]

Having two of my local researchers cited as claiming anyone who uses CBT/GET for ME should have their practices closed and be sued is particularly nice.

Do you have a reference for this @alex3619? I can see it as being a possibly useful rebuttal for the next time my specialist (who I only see to get my disability pension continued!) suggests GET. Have they ever said anything similar in a refereed journal?

 

[Sean]

Some potentially relevant info to this discussion from Peter Kemp, via Tom K:

http://forums.phoenixrising.me/inde...y-exploited-september-10-by-peter-kemp.46810/

 

[alex3619]

Do you have a reference for this @alex3619? I can see it as being a possibly useful rebuttal for the next time my specialist (who I only see to get my disability pension continued!) suggests GET. Have they ever said anything similar in a refereed journal?

This was covered on PR recently, and was in some kind of review. Dutch? The two are with NCNED. If I recall more or find it I will post it here. Don Staines was one of them, who said at a IIME conference in London some time back that anyone prescribing GET for ME (or CFS? I don't recall) should be struck off the medical register.

Have they ever said anything similar in a refereed journal?

No. This is not something you would be likely to see in a peer reviewed anything.

 

[RogerBlack]

https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political

This states "Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies." - this is incorrect.
SImplifying some.
DLA at the medium rate of care - if there is no overnight care need - is attainable for those with severe issues coping. Similarly at the high rate of mobility if there are severe mobility difficulties.
PIP similarly at high rates of both, primarily due to being unable to do tasks 'repeatably and reliably in a timely manner'.
ESA support group also - if one is unable to perform all the activities in 'work related activity'.

I am currently on (admittedly after a battle involving appeals) the highest rates of PIP, and ESA.
On DLA, I was on medium rate care (as no night needs) and high rate mobility.
I should in principle find the energy to find sources from my archive of upper tribunal decisions, and edit wikipedia.

 

[Yogi]

DBS Attorney Cal Stein Collaborates On Article About Scientific Research Misconduct


http://dbslawfirm.com/news/dbs-atto...-article-about-scientific-research-misconduct


Very relevant to the PACE trial and Peter White. Published on sept 8

New thread about this:

http://forums.phoenixrising.me/index.php?threads/pace-trial-and-research-fraud.46842/

 

[Esther12]

This states "Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies." - this is incorrect.
SImplifying some.
DLA at the medium rate of care - if there is no overnight care need - is attainable for those with severe issues coping. Similarly at the high rate of mobility if there are severe mobility difficulties.
PIP similarly at high rates of both, primarily due to being unable to do tasks 'repeatably and reliably in a timely manner'.
ESA support group also - if one is unable to perform all the activities in 'work related activity'.

I am currently on (admittedly after a battle involving appeals) the highest rates of PIP, and ESA.
On DLA, I was on medium rate care (as no night needs) and high rate mobility.
I should in principle find the energy to find sources from my archive of upper tribunal decisions, and edit wikipedia.

I'm pretty sure that higher level DLA mobility is not allowable for mental health problems.

An example of a new Biopsychosocial assessment seen by Benefits and Work resulted in a claimant with Chronic Fatigue Syndrome losing his higher rate mobility component on the grounds that his condition was 60% “psychosocial”. The new system will be aimed particularly at claimants with “medically unexplained” conditions such as ME/CFS, fibromyalgia, low back pain and IBS.

http://www.benefitsandwork.co.uk/news/186-new-genuinely-disabled-test-to-cut-dla-a-aa-awards

 

[worldbackwards]

It think that it was White (of all people!) who did guidance for DLA, saying that ME/CFS should be considered "physical" in the context of the assessment.

 

[RogerBlack]

I'm pretty sure that higher level DLA mobility is not allowable for mental health problems.



http://www.benefitsandwork.co.uk/news/186-new-genuinely-disabled-test-to-cut-dla-a-aa-awards

CFS is recognised by the DWP as a mental+ physical condition.
It has both physical and mental components.
I have no conditions other than CFS, and got high-rate DLA mobility.

https://www.gov.uk/government/uploa.../file/537346/a-z-adult-medical-conditions.pdf
Page 210. And 'severe functional restriction' on page 212.
These are all reasonably accurate descriptions, though of course they could be better.

Walking disorders are required (for DLA) to have some 'physical' basis - but this does not mean that it has to be musceloskeletal (assuming for the moment that there is no significant pain when walking, which separately qualifies).
The physical basis does not have to be medically understood, just that it cannot be 'purely mental' - this is a hideous definition, but in practice, it is usually accepted that CFS has 'some' physical element.

The version of the above guidance current in 2013 stated

The reality is that the disability of CFS/ME involves both physical and mental incapacity and it is important to ensure full consideration is given to all the disabling effects of the illness and an accurate assessment of care and mobility needs is made.

- the current does not explicitly state this.

I have had low-rate mobility component of DLA due to my CFS since 2010 or so, and last Febuary made a 'better' application requesting backdating, which eventually lead to a backdated award to Feb 2015 of the high rate of the mobility component.

http://www.disabilityrightsuk.org/h...s/case-law-summaries/attendance-allowance-and - an excerpt of a judgement on what the law is:

" a claimant may for example have physical back problems and also depression. If depression is due to her physical condition, at least in part, or if her physical condition is a material cause limiting her walking, albeit exacerbated by unconnected depression, then a tribunal is entitled to find any resultant walking difficulties are due to her physical condition as a whole".

The caselaw in this area is complex, and means that the legislation does not quite mean what it seems to on a bald reading.